Wheelchair-bound Newark teen feels comfortable in own skin when attending camp with help of Fresh Air Fund

Mitsu Yasukawa/ The Star-LedgerSakir Epps (age 13), who has an undiagnosed neuromuscular disorder he has had since birth, uses his knees to step up as his mother Tamika Epps (R) stands by the entrance of their multi family house while holding his crutches. And thanks to the Greater Newark Fresh Air Fund, his mother Tamika Epps, let go from full-time work since 2009, was able to send him this year.

NEWARK — Sakir Epps is just like any 13-year-old kid in middle school. He plays football and basketball. He hangs out with friends. He is excited to be around girls at dances.

Except Sakir was born with a neuromuscular disorder that affects the bottom part of his legs, leaving him mostly wheelchair bound. Wandering through the school hallways, often a difficult experience for any adolescent, can often mean dirty looks and petty taunts from kids looking to earn their spot on the junior high totem pole.

Sakir, never the type to ask for pity, said he takes all the insults in stride.

“I just put on my iPod,” Sakir Epps said. “I don’t even let it bother me. They can say whatever they want.”

Still, the teen says he had to develop a thick skin to deal with everyday life.

But, he says, those walls come down when he’s at summer camp. At Easter Seals Camp Merry Heart in Hackettstown, which accommodates kids with special needs, he is surrounded by kids who know daily life on a wheelchair. There, he isn’t different.

“At the camp I get to act like myself. I don’t have to impress anybody,” Epps said. “There I don’t have to act like I’m tough.”

But summer camps are expensive, especially facilities like Merry Heart. And Tamika Epps, Sakir’s mother, hasn’t been able to find full-time work since the beginning of 2009.

Thankfully, Sakir was able to go because of the Greater Newark Fresh Air Fund, which helps needy kids from urban areas go to summer camp.

Tamika Epps, 34, said her son’s disorder has progressively worsened as he has gotten older. Compounding the problem is that doctors cannot pinpoint an exact diagnosis, making it more difficult to treat his condition.

But she said Sakir is good at “adapting.” Sakir crawls around their second-floor apartment on his knees in Bloomfield without anyone’s help, his wheelchair waiting for him down the stairs on the first floor. He plays football with his school friends on his knees and shoots basketball while on his chair.

Proudly, she said her son has always been mature, even earning the nickname Pop because he behaves “like an old soul.”

“He’s just always acted a little wiser than his years,” Tamika Epps said. “Even at a young age, he was using words that I didn’t teach.”

This was Sakir’s third summer at camp, and his mother said she has clearly seen a concrete impact on his personal growth. He’s more outgoing. He has made more friends.

He feels more comfortable showing his emotions.

“He’s definitely come out of his shell,” she said.

Sakir said he learned to be more open from his counselors at summer camp.

Tamika Epps said she has had her own learning experience through the last two years. She has always had to do both a full-time job and separate part-time work to support Sakir and her 18-year-old son, Stefan, so being let go from her clerk position was devastating.

But rather than feel discouraged, she decided to enroll in a nursing program last year. She says the school year has been difficult — two days before the first semester started, one of her closest friends was killed — but she said the life lessons she gleaned from her own son has kept her going.

“I’ve learned from my son the definition of tolerance, humility,” she said. “It’s definitely been a journey, to say the least.”